Sunday, March 29, 2015

When Alzheimer's patients lose ground--as they will, there's no preventing it--the caregiver/patient relationship has to be renegotiated. For a stick-in-the-mud like me who really hates changes in any status quo, this is difficult.

The added layer of angst for a family caregiver comes from a sense of betrayal and loss because the loved one is drawing yet further away. Oh how we cling to the last vestiges of the mom/dad/spouse/sibling we once knew.

Our new challenge is incontinence. I had naively thought I would not have to deal with this issue. I have always said, "Once Mom is no longer able to navigate her way to the bathroom by herself, she will need nursing home care." In my mind this would be a time when she was unable to stand and walk independently. The choice would be clear-cut. Of course more seasoned caregivers are shaking their heads at me right now; dementia patients often forget proper toileting procedures before they forget how to walk. But I had nevertheless clung to a bit of wisdom offered me by our elder care attorney early on in this journey: "It is transfer issues that put people in nursing homes; inability to transfer from bed to wheelchair, and from wheelchair to toilet, etc." The interpretation I placed upon these words was faulty; I did not envision a time when Mom would be physically able to walk but would lack motivation or a strategy to do so. She waits for "guidance" as she calls the directions I give, and she reserves the right to resent that guidance.

I've adapted to the increased caregiving load. After these years that really wasn't terribly difficult. But Mom's anger and resentment has made our cleanup sessions nearly unbearable for me. She has kept up a constant flow of hurtful words about my motives and lack of competence; and with amazing virtuosity for someone whose thinking skills are so compromised finds her target in my heart. I have felt devastated by her words, which have felt nothing short of abusive.

Today I took this matter to the Lord in prayer and these thoughts came:

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Your mother is defending
herself because your responses to her accidents are perceived as
accusations.She feels criticized and
responds with acerbic anger. You can defuse her anger with a low key
response and a matter-of-fact attitude.Understand that, at times, her inner voice of self-condemnation becomes
tangled in her mind with your responses so that she believes the condemnation
is coming from you when it is not. Pray for her as you work, and this will set
up a shield from the accusations in her head, and will provide shielding for
you as well. The enemy’s barbs are defused of power to devastate when you are
praying for your adversary, even when that adversary is a loved one.

Sure enough, when I charted my initial responses to finding her seated in her own waste with no sign of discomfort or remorse, I realized I'd responded with shock and amazement rather than calm acceptance. And, I felt it necessary to explain to her what she had done (because she evidently didn't know), and so made her feel accused.

There was a deep sense of injustice, at first, that after all I've done for Mom that now I should be expected to do this. Yes, I felt God should not ask this of me. But this week the Sunday School material I prepared for the 1st through 3rd grade class at our church outlined the story of Jesus washing His disciples' feet. The Holy Son of our God, our King, kneeling, washing smelly, dirty feet... I have set you an example that you should do as I have done for you (John 13:15).

Jesus didn't give up on us when He found us soiled with the stain of our sin, He cleaned us up and has presented us to the Father as children of God, fit to enter the Kingdom. He did this for us. And sometimes He teaches us--in ways more graphic than we would have liked--how to love one another as He has loved us. The good news is that when He puts us in these situations He also provides amazing help; all that's really required of us is our willingness to go where He sends us and to do what He asks. He provides everything else. I've felt the comfort of His presence and provision of the smallest things I need as I go about this work He's provided me to do.

He'll do the same for you.
********Note: I have been prepared for these recent challenges over eleven years of caregiving for my mom. Twenty years ago when my father underwent similar difficulties during the months he was dying of lung cancer, I couldn't face those challenges; I was unable to help him in this way. Don't condemn yourself if you have been unable to minister to a loved one as I've described here. There's no shame in not being able to do a back flip if you aren't a gymnast! God prepares us for the challenges He provides.

Saturday, March 21, 2015

Perseveration is sometimes a behavioral manifestation of those who have suffered
brain damage. The term means simply that the patient repeats
a certain action or behavior over and over and over
again.

This morning I picked up my mother's journal to find three pages of entries like the ones above, an example of perseveration; here is visible evidence that her poor mind has been compromised by the hateful effects of Alzheimer's. For some reason this outward symptom of her dementia upset me terribly. The proverbial straw, I guess.

I cried out to the Lord, weeping:

Lord, You know what portion of my tears are selfish; what will I do without my mother?

You know what portion of my tears consist of terrible empathy for my sweet mom who is lost in a confusion she did not choose and cannot help, a victim of the brain damage caused by Alzheimer plaques and tangles. I dread the increased suffering she may have to endure. And You know what portion of my tears come from worry that the same thing might happen to me.

I had lapsed to fear not only of Mom's death, but of the struggle we may have to undergo on her way to that final passage. So I turned to the road map the Lord was gracious to provide us near the beginning of my mother's battle with Alzheimer's. Over a series of months I recorded His guidance into a manuscript that became My Mom Has Alzheimer's: Inspiration and Help for Caregivers (Bridge-Logos, 2009). Here are quotes from the book that have helped me today:

The Lord... is sovereign over death. His good and perfect will encompasses every life event, even those that cause us pain. He is able to work every circumstance into conformity with His will, for our good (p. 247).

Jesus Christ has conquered death. His purpose in coming was to deliver me and to set me completely free. He is trustworthy and He is in control. I pray for grace and the will to look steadfastly at Him so that I will not be afraid (p. 250).

Our physical bodies are like the alabaster vase that held the nard Mary poured upon the feet of Jesus. The vase was broken to release the perfume. Each of us is headed toward an appointment with physical brokenness because no one escapes physical death. Sometimes the process of death is painful and for just a little while, we are preoccupied with the breaking of the container, but then the fragrance of Christ flows forth as the spirit is released (p. 255).

And what wonderful comfort from Scripture:

“I will lead the blind by ways they have not known, along unfamiliar paths I will guide them; I will turn the darkness into light before them and make the rough places smooth. These are the things I will do; I will not forsake them” (Isaiah 42:16 NIV).

“And you saw how the Lord your God cared for you all along the way as you traveled through the wilderness, just as a father cares for his child. Now he has brought you to this place” (Deuteronomy 1:31, NLT).

“He heals the brokenhearted and binds up their wounds” (Psalm 147:3 NIV).

I don't feel happy right now, but I am calm. I don't like feeling sorrow, but I am assured of the Lord's comfort. I'm tired but I am confident the Lord will provide me strength.

As I write these words, Mom is comfortably tucked into bed, sleeping soundly. She is doing ok right now, and because of God's grace and guidance, so am I.

Saturday, March 14, 2015

Nearly eleven years of caregiving have taught me that transition times--when the patient is undergoing a downward turn--can create tension and trigger grief over what has been lost. I'm struggling through a sad transition time with my mom--please pray for us!

I really am very tired today but am shaking it off right now so the remainder of this post should be more upbeat and downright helpful!

Below you will find a list of products that have helped us during the complete incontinence Mom suddenly began to suffer a week or so ago. I worried that she had suffered a small stroke, but our nurse practitioner treated her for a urinary tract infection. She has now actually regained a measure of bowel and bladder control since her difficulties of last week. Note to caregivers: in Alzheimer patients, urinary tract infections can cause seemingly unrelated symptoms such as hallucinations, apathy, withdrawal, and loss of will to make those all important trips to the bathroom. For whatever reason, for two days Mom just withdrew into herself and sat immobile, unwilling to stand or walk, and although I knew UTI's can present with atypical symptoms in the elderly, I didn't recognize the signs. You'll find a helpful article about UTI's in the elderly here.

This priva sheet protector has saved me a world of grief. I use baby diaper pins to secure it on top of the sheet, so that in the mornings I simply unpin the protector and have only to launder it--an easy task as compared to having to change the bulky mattress pad and under sheet on a daily basis.

These baby diaper pins fasten securely and have not come undone. I put three on each side of the waterproof pad. I also use these to secure Mom's blanket to the opposite side of her bed so that she doesn't pull them off and become entangled when she tries to walk away. This had become a problem, and Mom claimed it was because she always rolls over the same way (this elicits a mind picture of her performing 360 degree rotations throughout the night). For whatever reason, before I began securing them with diaper pins, her blankets ended up on the floor by her walker by morning.

For now, Mom's problems with incontinence have decreased in severity and my caregiving load has lightened once more. But her bout with this UTI motivated me, finally, to tour a nearby nursing home and it was an overwhelmingly positive experience. Caring staff, a perky little dog who greeted us at the door, residents who looked clean and happy, a popcorn machine and movie room--I came away feeling as though a heavy burden had rolled off my shoulders. When my knees buckle and I can no longer take care of Mom here at home, it is wonderful to know there is a place where she can be happy and well-cared-for apart from me.

Meantime the Lord just keeps providing the help we need at our point of need. Preparing to release my mother into the care of others is hard, but I know the Lord will see us through.

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About Me

If my mom hadn't gotten Alzheimer's, I would never have written a book
for caregivers. If I hadn't lost the reading program that meant so much
to me, I wouldn't have taken early retirement from my teaching job. If I
hadn't already had author status, I'd never have written a novel that
is a tribute to how much I loved teaching kids to read. If God hadn't
kept my heart's needs in mind through the sorrows He allowed, a
traditional publishing company never would have picked up either of my
books. And if I hadn't become overweight, I'd never have learned about God's mercy and grace in a way that would help others and free me from a lifelong case of self-condemnation. I am grateful, and have peace in the understanding that God truly
does work all things together for good.